Epilepsy Talk

Epilepsy – A Dirty Little Secret? | January 28, 2013

Why would you say: “I have epilepsy.”

To be included — or excluded?

To be accepted — or rejected?

To be understood — or misunderstood?

To be loved — or laughed at?

I’d say, all of this — or more.

Epilepsy is either a grace — or a dirty word.

It’s all a matter of how you look at it.

And how you say it.

Speak up. Speak out. Shout!

Let the world know.

I am me. No matter what you label me.

I have a voice…a life…and a heart.

You can help me or hurt me.

You can ignore me or plead ignorance.

But I’m not going to go away.

 

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48 Comments »

  1. I wouldn’t say it outside of a doctors office just yet. I am 42 and only had 2 seizures this fall. Right now its still a “seizure condition secondary to brain surgery” (according to my doctor).
    But I would hope that people who have been officially diagnosed with epilepsy, regardless of how well managed, could say without shame that they have epilepsy and not lose their support network.

    Like

    Comment by Regina — January 29, 2013 @ 12:26 PM

  2. I do agree. And when your friends find out you have epilepsy, it certainly sorts out the thick from the thin!

    As for the seizures after brain surgery, I presume they are abating?

    My best friend ended up with Traumatic Brain Injury after surgery and, with the right meds, she’s getting the seizures under control. (Except for some break through seizures.)

    Here’s hoping the same — or even better results — for you!

    Like

    Comment by Phylis Feiner Johnson — January 29, 2013 @ 2:32 PM

  3. By talking to so many people. When we are controlled. We are no different then anyone one else. Even those that have diabities it they don’t take there medication thay can even have seizures.

    Like

    Comment by Pauline Polzin — January 29, 2013 @ 7:09 PM

  4. I call epilepsy the “stealth disease.”

    Because nobody sees it, nobody recognizes it and nobody wants to know about it.

    Where there’s ignorance, there will always be misunderstanding.

    Here’s an article you might be interested in reading:

    Epilepsy and Diabetes – Confusion or Common “Cure”?

    https://epilepsytalk.com/2010/05/10/epilepsy-and-diabetes-%E2%80%93-confusion-or-common-%E2%80%9Ccure%E2%80%9D/

    Like

    Comment by Phylis Feiner Johnson — January 29, 2013 @ 7:35 PM

    • i have epilepsy,some who become aware in my construction field,consider this a red flag and move to dismiss my presents,more time then not convince management to find a way to relieve me of my employement out of there fear of the unknown.not easy when the fear of the unknown outweighs the reality.

      Like

      Comment by frank neff — February 2, 2013 @ 3:03 PM

  5. Frank — hats off to you for your persistance and courage.

    Construction is a field known for its bullies, but you seem to cope with that, well.

    How does management treat you?

    You might be interested in this article:

    Epilepsy and Employment

    https://epilepsytalk.com/2012/11/13/epilepsy-and-employment/

    Like

    Comment by Phylis Feiner Johnson — February 2, 2013 @ 3:26 PM

  6. Convincing myself to ACCEPT, FACE & ADMIT to Epilepsy has been far more harder & difficult, than “disclosing” the deep-seated personal secret I tried to cover-up, but all the people around me ALREADY seem to know I’m epileptic, seen me having seizures.

    ACCEPTING THE OBVIOUS REALITY seems personally daunting than EXPLAINING the “deep-seated-personal secret”, OBVIOUSLY DISCLOSED IN PUBLIC INCIDENTS, knocked out unconscious, disoriented, seizing,,,

    Epileptic seizures seem far more PUBLIC SHOW, except for the UNCONSCIOUS PATIENT knocked out & seizing, making the “deep-personal-secret” impossible to stay personal.

    Gradually, Learning to live with the OBVIOUS REALITY, takes over the “deep personal secret”, one learns to let it go, after TOO MANY seizures to cover up, publicly.

    Finally, one learns, with or with out Epilepsy & deep seated personal mystery, LIFE GOES ON & ON & ON!

    In the end, SHARING EXPERIENCE MAKES EPILEPSY FAR MORE MANAGEABLE TO LIVE WITH, THAN ONE COULD EVER IMAGINE, making the personal mystery public.

    CHEERS !!!

    Like

    Comment by Gerrie — February 5, 2013 @ 5:41 PM

  7. Ah Gerrie, I don’t have to tell you this, because you already know (and have done it).

    You can either become a victim of epilepsy and let it rule your life or you can decide on your own destiny.

    Only YOU have that power.

    (And I know that YOU do!)

    Like

    Comment by Phylis Feiner Johnson — February 5, 2013 @ 7:06 PM

    • I totally agree with you, Phyllis,

      Thanks to all of you on this forum, I’ve come a long way from the CONFUSION, DENIAL, deep seated anger, bitterness, resentment, frustrations, cover up & learned to live with epilepsy.

      Though the journey was NOT picnic, it just very HELPFUL to know, we can come here to discuss & share our ordeals & remedies to overcome the daily struggle with epilepsy.

      CHEERS, we have come a very long way together.

      Like

      Comment by Gerrie — February 7, 2013 @ 6:02 PM

  8. YOU’VE come a long way, baby. 🙂

    And we’re a family, hopefully growing with one another’s help…

    Like

    Comment by Phylis Feiner Johnson — February 7, 2013 @ 8:14 PM

  9. Hi Phylis, I have had epilepsy for 42 out of my 44 years and only recently have I ‘come out of the shadows’. Although my employer knew I had epilepsy when they hired me only recently have they had to watch me have them. You really find out who your friends are

    Like

    Comment by Michelle Watts — February 13, 2013 @ 1:21 AM

    • Yup, it’s a matter of who will stand by you through the thick and the thin.

      Especially when you’ve just recently “come out of shadows.” I think it takes a lot of courage and I’m very proud of you for doing so.

      This is from an article you might find of interest…

      Here area few tips to follow when discussing your epilepsy:

      Telling Co-Workers About your Epilepsy

      1. It’s often a good idea to review first aid measures. Others need to know what happens during a seizure. The explanation should be reassuring. It is normal for them to be frightened when first watching a seizure, so they should be told that the risk of serious injury is small and that the seizure does not cause pain.

      2. They should know what is going to happen when you have a seizure such as how you may behave before, during and after the seizure, what they should and should not do if one occurs. (Like not to stick anything in your mouth during a seizure, because the belief about swallowing the tongue is a myth.)

      3. You should tell them when to call for medical personnel or an ambulance, but it should be emphasized that this is rarely necessary for a person with epilepsy who has a single seizure.

      4. Coworkers should also know that you may be confused after a seizure but should be left alone if you are in a safe place and seem to be all right. They should not hold or restrain you unless it is absolutely necessary for safety.

      And if you do have a seizure, when you have fully recovered and returned to work, you should acknowledge what happened, thank the people who were helpful and ask if they have any questions.

      (I chose to tell one person in each setting because I was in advertising at a highly visible job with lots of meetings, presentations and clients galore. And no, I didn’t tell the clients!)

      “The thing is, being up front is important. Telling them you have E is important, but I would advise doing it after the job offer. Otherwise they may ‘go in a different direction’ because of it and have no fault.

      Telling a potential employer has two advantages, one is that they are aware in the event that you have a seizure at work. The other benefit is that you can potentially get something from your doctor that says that if you are feeling ill or what have you, you can take off with no repercussions for you. Its called an intermittent leave of absence.

      https://epilepsytalk.com/2012/11/13/epilepsy-and-employment/

      Like

      Comment by Phylis Feiner Johnson — February 13, 2013 @ 10:34 AM

  10. Thank You Phylis! All this & More! 🙂 Couldn’t have said it better Myself! HUGS!

    Like

    Comment by Candi Phelps — February 23, 2013 @ 10:21 AM

  11. It’s perfectly acceptable and understandable not to tell people the ‘public’ however, I personally have a combination of conditions. They came fast and strong. Not only did it completely frighten my coworkers to the point they were loud about it which then announced it to so many coworkers it became impossible to be silent.
    I did put my doctors card up so the immediate ppl I worked around me would have that information.
    I had a TIA in my sleep by the 5th month with my conditions and had to stop working.
    ER has become my ‘friend’ ha! When I need to call my doctor they already know my information which I think is something to shake my head and say ‘geeze’!
    I have extending family who have one or the other of my conditions but in a very mild form thank God.
    I’m Very happy for those who don’t need medication for these conditions!
    On the flip side I’m on a great deal of dif meds. The paramedics were not inclined to look in my purse for a card so they did what they what the norm is. Now, I have the USB medical bracelet. It’s really detailed and nice for those with a combination of illness, what to do and not do, medications and history. wow it’s detailed! 🙂
    My neighbors know because I had a bad attack enough that I called for one to bring coffee. I didn’t want an ambulance again… (I live in a seniors community that I call Old Folk Payton Place ha ~) Now everyone knows and Yes, now some keep on walking by.
    I have a DNR and more concerned about my children finding me.
    So, what my long winded comment is, depending on the situation, do what you need or not 🙂
    I personally feel bad that things are pins and needles for my kids. They are over 23

    Like

    Comment by Ro — February 27, 2013 @ 4:00 PM

  12. The two most important things that you did was get that bracelet and assign a medicial proxy.

    (You DID assign a medical proxy didn’t you? Because a DNR is far from enough. You have to have an actual humanoid to carry out your Medical Directive and make sure they do NOT resusitate.)

    As for your kids, maybe they need a little more education.

    One book suggestion is Epilepsy: Patient and Family Guide, 3rd Edition By Orrin Devinsky, MD

    http://www.amazon.com/Epilepsy-Patient-Orrin-Devinsky-M-D/dp/1932603417/ref=sr_1_fkmr1_1?ie=UTF8&qid=1362000439&sr=8-1-fkmr1&keywords=epilepsy+patient+and+family+guide+3rd+edition+orin+devinsky

    Another idea which might sound dorky, is trying some role playing with your kids.

    You have a “fake” seizure and they perform first aid. (Until they get it right!)

    Once they get the hang of it, they won’t be so afraid.

    You know the old saying: People are most afraid of what they DON’T know.

    Like

    Comment by Phylis Feiner Johnson — February 27, 2013 @ 4:33 PM

    • Yes, all paperwork for the DNR is completely with two of the closest hospitals, the USB has the DNR on it and the information for the hospitals. My children have all they need for that and more (POA etc).

      You hit it on the head. They already had hands-on experience. The only one that has some difficulty is my son. My girls are in the medical field so they are more medically informed but I’m still mom.

      I have continuous seizures day and night. The doctors found that out. The important part is the intensity.

      I’ll send the link on to my kids. I can’t comprehend well. I read things out loud but it leaves my mind quickly. Email is great! I’ll put it in an email that I send. With that said, afterthoughts are frequent but I don’t want to forget to send the email haha

      Thank you for the link!

      Like

      Comment by Ro — February 27, 2013 @ 5:23 PM

  13. Ro, don’t put yourself down. (Even if you have a crummy memory.)

    You’re one SMART cookie!

    I wish everybody planned ahead as you do and made the necessary decisions.

    Like

    Comment by Phylis Feiner Johnson — February 27, 2013 @ 5:39 PM

    • Thank you Phylis. I lean toward being a just in case type of person.
      And thank you for your compliment! Very nice of you to say 🙂

      Like

      Comment by Ro — February 27, 2013 @ 5:58 PM

  14. As my best friend says: “Do you have a plan?”

    She’s been asking/saying this to me about different situations for 30+ years!

    And you’re right. It works!!! 🙂

    Like

    Comment by Phylis Feiner Johnson — February 27, 2013 @ 7:04 PM

  15. humanoid ~ lol I can’t stop chuckling

    Like

    Comment by Ro — February 27, 2013 @ 9:31 PM

  16. I just had to respond to this.
    When I was refractory I was never ashamed of my epilepsy. I always admitted I had epilepsy as I do now.
    I never know when my seizures may start back.
    I’ve gone down waiting for the subway or in downtown Atlanta for 48t years and I’ve been told I should’t go out by myself but I refuse to stay home I have a life.
    If some one can’t handle my seizures that’s there problem.

    Belinda

    Like

    Comment by Belinda — February 28, 2013 @ 12:29 PM

    • BELINDA, YOU’RE THE BEST!

      Hat’s off to you!!!

      Like

      Comment by Phylis Feiner Johnson — February 28, 2013 @ 3:15 PM

    • GOD Belinda,,, “If some one can’t handle my seizures that’s their problem”. :-):-):-)

      WOW Belinda,, I admire your guts & courage to just spill it out, to hell with anybody.

      Imagine, many of us tried DESPERATELY to hid & cover up our “deep seated personal secret” to only end up having seizures in front of the very people we tried to cover up our seizures.

      Thank you for your courage,,, I’m VOTING for your DECLARATION,,,

      “If some one can’t handle my seizures that’s their problem”.

      WAY TO GO,,, BELINDA,,,, :-):-):-)

      Like

      Comment by Gerrie — February 28, 2013 @ 5:19 PM

  17. For me it is my 7 year-old son who has epilepsy or “E” as you put it. He started having seizures one day out of the blue at the age of 4. He had about 3 that day before they figured out that Keppra was the right med for him. He has been on it every since and has not had another seizure.
    I worry about him though. He has a hard time relating to kids at school, and has to work really hard to master most school work. They do not want to make him repeat 2nd grade, but they complain that he can’t do all of his work independently. Nobody has been able to diagnose him with ADD, Asperger’s, etc. Do you know if seizure meds can cause any of these symptoms?

    Like

    Comment by kesia torrance — March 5, 2013 @ 9:47 PM

  18. Since I’m not a doc, my knowledge in that field is limited.

    Ironically, I’ve read of Keppra as a treatment for ADHD.

    Keppra Used For Attention Deficit Hyperactivity Disorder

    http://www.healthcentral.com/adhd/h/keppra-used-for-attention-deficit-hyperactivity-disorder.html

    Like

    Comment by Phylis Feiner Johnson — March 5, 2013 @ 10:15 PM

    • Thanks for this info. I hope that someone will figure this out soon!

      Like

      Comment by kesia torrance — March 5, 2013 @ 10:58 PM

      • That is interesting about Keppra. Using the link it stated as you said Phylis so I looked up Keppra.
        It’s remarkable so many medications are used for different purposes isn’t it?
        http://www.drugs.com/keppra.html

        Like

        Comment by R — March 18, 2013 @ 8:14 AM

  19. Education, education, education. That’s what we need!

    Like

    Comment by Phylis Feiner Johnson — March 6, 2013 @ 9:18 AM

  20. I would like to ask Belinda, what type of seizures do you have or is it restricted to ‘epilepsy’. I don’t like to put all in to one classification.
    By chance do you have other conditions and what medications do you take?

    It’s great that you head on out there and go to the subway and all! 😀 Does that mean for most part your seizures are controlled? May I ask what medications you are on so I can speak to my specialists?

    Thanks much Belinda!

    Like

    Comment by Ro — March 18, 2013 @ 8:22 AM

  21. Hiya Kesia,
    I’m sorry to hear about your son but at the same time I’m happy he hasn’t had more seizures!
    By chance did the doctor or pharmacist speak about side effects with Keppra?
    http://www.drugs.com/keppra.html
    http://www.drugs.com/sfx/keppra-side-effects.html

    All else fails, speak more to the doctor about it.

    My son was having a problem in school at one point. That’s when the children and I moved to Georgia. The teacher claimed he had ADHD and I laughed. It turned out that he was too smart for the class and was bored.

    Sending my best to you and your son Kesia!

    Like

    Comment by Ro — March 18, 2013 @ 8:36 AM

  22. Hiya Belinda, I’m not sure if people are ashamed or embarrassed. I would imagine for those who had seizure for a lessor amount of time as you, they’ve not explored the world as much. Wow! 48 yrs! I’m sure you don’t tell everyone on the street you have epilepsy lol. Some just don’t find the need to talk about it or perhaps don’t want to. Is it fair to say that most your friends, coworkers and family know about your seizures?

    It differs from person to person regarding their situation and again it’s great yours sounds for most part controlled. Is that correct? I’m just guessing but it’s not good to guess.

    There are several people that have seizures, take their medication and that is all they need, hopefully low dosage. On occasion the medication may need adjusting. Some reach a time where they won’t need medication and that is awesome isn’t it?!

    I asked what I did before regarding your situation with reason. (this is one of my afterthoughts).

    In my case my medical bracelet is enough and if someone asks, I’ll tell them. In my eyes, it’s just a pain in the neck to keep talking about it and after a bit it’s like opening Pandora’s box. My family is absolutely Huge. A little get together is about 150 people. I can’t imagine just talking about seizures, TN, TIA’s, small vessel disease, medications and so on and so forth. The idea of a get together is to have fun and catchup right? 🙂

    Anyway, I don’t know people on the web well enough to tell what their situations are nor do I know what their complete health situations. I wish them all the best and if I am around, hopefully I’ll see the conversations and interaction between people. Maybe give an idea or two that they can speak to their doctor about or even an idea to keep calm. Support groups are a great system 🙂

    We’re here for moral support! Oh yes yes yes lol
    have a great day ladies! 😀 Wishing the best to you all

    Like

    Comment by Ro — March 18, 2013 @ 9:05 AM

    • Ro, for me epilepsy was my “dirty secret.”

      Take a look at:

      Confessions of 40 years with epilepsy…

      https://epilepsytalk.com/2010/04/24/confessions-of-40-years-with-epilepsy/

      Like

      Comment by Phylis Feiner Johnson — March 18, 2013 @ 10:07 AM

      • oh! Phylis,

        I took a look see at your writing. In a way it was similar in my house. I can empathize your feelings because it’s perfectly understandable to feel and think that way. Heck, some don’t understand what people go through when others have illnesses especially when they’ve had pretty healthy lives. Wisdom with age and experience right? Sad they didn’t have the confidence to be able to accept that people are people. No one is perfect. They just don’t know how to deal with things in life. I pray that those sort never need to go through what we do. They may not have the strength!

        In my family, we didn’t have a need to talk about health ‘things’ outside our doors. I wasn’t allowed to date until later teens and when I reached the age I was working 7 days a week so it didn’t really matter.

        I’ve experienced many illnesses. I had some birth defects and had surgery on most after I had married. Divorce came around and raised my kids alone so taking off work was not much of an option and very difficult. I waited the yr until I qualified for coverage.
        My son was very ill for many yrs, daughter also ill and so on. One of my children was healthy. Saying that I mean she had a problem with getting kidney problems so I made sure the precautions were taken. Had I know some things were genetic, maybe, Maybe I would have thought through having children. That hurts more than me going through the heath things

        I’ve also been in the hospital slipping into coma and so on. In and out for surgeries too.
        One of my daughters said to me now, until I say there is something to worry about she isn’t going to worry that she has seen me on my death bed at least 5 times. (internal bleedings, brain tumor, died once and was bleeding from every opening,.. etc) So to me it seemed second hand for me. On the plus side when it came to my kids, I knew what to do.

        Yes, I’ve been told I’m broken, damaged etc..

        You’ve blossomed into a woman who understands what comes along the way when it comes to seizures. I’m very happy you have someone that gives you that moral support and love you should have!

        Like

        Comment by Ro — March 18, 2013 @ 11:19 AM

  23. You are so right Phylis!!
    Education, education, education~

    Like

    Comment by Ro — March 18, 2013 @ 9:10 AM

    • Wow Ro, what a long, hard, haul you’ve had.

      I admire your courage and bravery, your sensibilities and sensitivity.

      If there were more people like you, the world would be a better place — for EVERYONE!

      Like

      Comment by Phylis Feiner Johnson — March 18, 2013 @ 12:27 PM

  24. I say I have epilepsy. That way the person can see that a person with epilepsy(me) is not nessisarily different. I go to a rehab. for my heart & when walking around the track with the worker, I am happy to tell her I have epilepsy & it gives me a chance to tell her a little about epilepsy.

    Like

    Comment by Lor — August 12, 2015 @ 12:30 PM

  25. BRAVO! Another advocate. Speak up and speak out!
    🙂

    Like

    Comment by Phylis Feiner Johnson — August 12, 2015 @ 2:53 PM

  26. It is better to find out what sort of a response you will get now rather than getting a nasty surprise when you need to depend on people in dire situations.

    I don’t meet people with a “Hi… I have epilepsy!” but they know about it within a month or two.

    My early on communication of this may be a residual affect from the “Now I’ll find out who my REAL friends are” phase in my stages of acceptance.

    Like

    Comment by David Naess — November 24, 2015 @ 11:26 AM

  27. Good point.

    Now add dating onto that and you have a real disaster.

    Some of my dating experiences were funny. Some were pathetic.

    For a little humor, read:

    Dating Disasters and Epilepsy

    https://epilepsytalk.com/2012/05/12/dating-disasters-and-epilepsy/

    You may laugh or cry, but the story does have a happy ending!

    Like

    Comment by Phylis Feiner Johnson — November 24, 2015 @ 3:00 PM

  28. no es necesario decirselo a todos o llevar un letrero

    Like

    Comment by oscar slim — November 25, 2015 @ 10:27 AM

  29. I’m so sorry. Could you please translate that?

    Like

    Comment by Phylis Feiner Johnson — November 25, 2015 @ 1:37 PM

  30. Unless you have silent ones it is hard to keep it a secret. I have had it for 40 years and never kept it a secret. My seizures have gotten worse in the last 3 years. I fall to the ground now. I have family and friends supporting me all the time!!!!

    Like

    Comment by Tammy Wescott — December 20, 2016 @ 9:49 AM

  31. Tammy, personally, I think that’s the best way to go.

    But it hasn’t always been that way for me. (Job discrimination, etc.)

    Like

    Comment by Phylis Feiner Johnson — December 20, 2016 @ 11:17 AM

  32. I have epilepsy for medical reasons. People believe I’m perfectly healthy and think they are unnecessary. I have CGD which effects your immune system. To date the oldest survivor is 55. People say “why would you have it” .
    Thirty years ago on vacation in met a girl and she asked to read my palm,I said sure.
    She looked at my palm and looked at me.i asked her what it Said. She told me I know what it says. All the small short Lines mean critical health and the short life line with a line running across my palm means death. I had been pronounced Brain dead and she said that’s it.
    What do you think would happen if I told this to your average person.
    I have a old letter from a doctor saying I have had a fever of 105 for six weeks time and still did not appear that sick but he knew my past so he took it seriously.
    I was a employee at a special education school for 20 years. I had many seizures during the 20 years. The school had paperwork but still did not take it seriously.

    Like

    Comment by Ed — December 20, 2016 @ 11:30 AM

  33. Ed, when I was 14, my doctors said I would be dead at 55. I’m now 63.

    I wish they were still alive so I could stick my tongue out at them. (Or something worse?)

    P.S. How did the school behave when you actually had a seizure?

    Like

    Comment by Phylis Feiner Johnson — December 20, 2016 @ 11:35 AM

  34. When I first started having seizures I was 22 and afraid to tell anyone. But back in the 80’s the stigma was still real bad. The still started you out on phenobarbital, but the amount I needed almost got me fired. Fortunately I was union and they gave me a written warning saying I was drunk. So I had to tell my boss and being my job was a desk job it was not dangerous. Then the doctor changed my meds to tegretol which he said at the time was a newer one. No more drunk act at work.

    Like

    Comment by Deb — December 20, 2016 @ 12:54 PM

    • In the early days (1960s) it was either dilantin or phenobarbital, period.

      I chose the “lesser of the two evils” — dilantin — or so I thought, and still staggered around like a zombie, until I went toxic and went into a coma.

      Like

      Comment by Phylis Feiner Johnson — December 20, 2016 @ 4:21 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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